This blog is by Ian Penfold. Ian is a carer for his wife and son, who have a range of health and medical needs, including learning disabilities, dementia and autism. He also works with NHS England’s Care, Education and Treatment programme as an expert by experience, is a local champion for the Challenging Behaviour Foundation and volunteer for a number of charities and groups such as The Carers Trust, Healthwatch, Mind Ed, and a national charity called Bringing Us Together.

Ian was involved in BIHR and Liberty's "lived experience roundtable" for the Independent Human Rights Act Review panel members. You can read more about this here.

Please note, this is a guest blog and views expressed in this blog do not necessarily reflect the views of BIHR.

Even though life hasn’t been easy at times as my son has a learning disability, autism, and additional health needs we have always done our best to try and give him a good quality of life with the best care and support that we could.

We know how hard it can be to obtain appropriate health and care services for someone like our son and how important rights can be, particularly in support of disabled people as their needs are sometimes not well understood.

There have been times when I have had to resort to legislation such as the Equality Act and the Human Rights Act[1] to fight his corner and on one occasion even had to request help from the Court of Protection to deal with a life-threatening issue.

In addition to my personal experience, I have worked with disability groups for many years, and I know that others with learning disabilities can find it so hard to secure appropriate health and care support too. The reasons for this can be many and varied including services being unattainable, misdiagnosis, communication difficulties and misunderstandings.

Sadly, as a result, they often live shorter lives, and you only have to look at the evidence from the Learning Disability Mortality (death) Review programme (LeDeR) to see the impact which confirms that even before COVID-19, people with a learning disability faced serious health inequalities and had a significantly lower life expectancy – with women dying on average 27 years younger and men dying 22 years younger.

We think that every life should be valued equally and that everyone should be treated with decency, dignity and respect underpinned by laws and rights which uphold our values.

Human Rights are a vital part of the safety net that we all need to make sure that standards don’t slip below what we think is acceptable as a Nation.

The Government is currently undertaking several reviews into various pieces of legislation including the Human Rights Act. I am especially concerned that reforming the Human Rights Act could potentially make life more difficult for my son and those like him by undermining their rights and as a result make it harder for them to live an equal life.

Please make your voice heard if you too are concerned about this.

[1]   Article 2            Right to Life

Article 3                Right not to be tortured or treated in an inhumane or degrading way

Article 8                Right to respect for private and family life, home, and correspondence

Article 14              Right not to be discriminated against in relation to any of the Human Rights under the Act